Blogging my experiences living life with mast cell disease. Sharing how my husband (Nick), service dog (Leni), pet dog (Bonk), and I find ways to enjoy life even with a rare disease and trust God even when things feel out of control.

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Monday, February 6, 2017

The Rise and Fall of Herman I, II, III, and IV

Today is Day 1 of Feeding Tube Awareness Week! Considering I now have 2 feeding tubes, I thought it was only fitting that I write a post to spread some awareness about mast cell related digestive issues and feeding tubes!

It has been almost exactly 2 years since I had my first feeding tube placed. For those of you who have been around this blog (or my life =P) for that long, you may remember Herman I, the NJ tube. NJ stands for nasojejunal and meant that this tube went down my nose (naso) into the middle portion of my intestines (jejunum).

After 2 months of being unable to blow my nose without making a huge mess and feeling like a fish in a fishbowl any time I was in public, Herman I became Herman II and I had my first surgical tube placed. For the past 2 years I have had what is known as a GJ tube. This was a 2-for-1 deal. I got 2 tubes but only needed 1 hole! The G portion of the GJ was the larger of the 2 tubes and entered my stomach through the hole my GI doctor poked in my abdomen. The J portion of the GJ was the smaller of the tubes and ran down the inside of the G. It passed through my stomach into my small intestines and ended right about the same place that Herman I did in my jejunum.

Herman II lasted me a year, and then it was time to change him out. The material the tubes are made out of are not indestructible, especially when combined with stomach acid and formula and whatever else it may come into contact with (food, drink, medications, etc.). Eventually, the tubes will break down and they will need to be changed out for bright and shiny new tubes. Herman III was identical to Herman II, and also served me well during his tenure.

However, due to a major increase in GI symptoms a few weeks before Thanksgiving, Herman III ended up on the chopping block sooner than we expected. With no real indication of what was causing the increase in symptoms, my doctors felt that there was a chance that the stitches that kept the J portion in place in my intestines had been dislodged which might have been irritating my already touchy GI tract. About 8 months after he was placed, Herman III was out of a job, and Herman IV made his very eventful and very short debut.

And here is a photo of the black sheep of my feeding tubes...oh Herman IV...how I do NOT miss you. In his one month of glory, Herman IV did his best to align himself with my nasty masties, and unfortunately, was a bit too successful in his attempts. What went wrong? We're not sure. It's possible that when the J portion was stitched into my intestines, the opening of the J tube was right up against the wall of my jejunum which meant that it would periodically (and completely randomly) not work. It is also very possible and likely that the J portion was kinking somewhere along the almost 2 feet of tube that wound through my gut. Again, this meant that when I would try to run my feeds or push medications, it wouldn't work. A non-working feeding tube and cranky mast cells requiring a very precise medication schedule and emergency administration as needed did NOT mix well...It unfortunately lead to multiple bouts of anaphylaxis simply because I couldn't take my meds when I needed to...not cool Herman IV...not cool...

Like I said, our rocky relationship lasted but one short month before the decision was made to take away for good any potential for future kinking or dislodging. While on paper (or screen) that sounds like a great plan, in real life, that meant surgery for me. So a week and a half ago, the reign of Herman IV came to an end and I woke up from surgery to 2 tubes instead of the 2-for-1 deal I had gotten used to over the past 2 years.

I still have a Herman, don't worry! Herman V is now what is called a button-style G tube and still goes directly into my stomach. Nothing really changed at this stoma (aka hole in my abdomen) other than the tube is no longer a GJ, but just a stand alone G. This is the original stoma that was created 2 years ago for Herman II. Thankfully I have had almost no issues with the stoma, so it was an easy change from the GJ to the G button. The tough part was having to have actual surgery to create a new stoma for the stand alone J tube. While many times this placement ends up close to the hip bone, my odd anatomy that made placing the GJ tubes a challenge, actually worked in my favor for the surgical tube. The surgeon was able to place the J tube high in my abdomen only about an inch from Herman V which has helped considerably with my recovery. There is much less muscle to have to cut through in the upper abdomen vs. the lower abdomen. And, after many suggestions were offered and much thought was put into it, I chose to name my new J tube Sherman.

And so begins a new era with Herman V and Sherman. In 6-8 weeks once the stoma for Sherman has healed completely, I will be able to exchange the long tube for a J button similar to Herman.

It's been 2 years of living with a feeding tube and relying on formula for nutrition. I remember how overwhelming it felt when I woke up with Herman I taped to my face and being taught how to use the pump and care for the tube. What we thought (more hoped) would be a temporary solution has become a (for now) permanent fixture in my life. Do I wish I didn't need a feeding tube? EVERY. DAY. But don't mistake that for wanting to get rid of them. Having Herman and now Herman and Sherman has been one of the best decisions we made for my health. I hope and pray that one day I will be healthy enough to be able to live without feeding tubes, but I'm not waiting for that day to keep living my life.

Since having that first tube placed 2 years ago, I have learned that living with a feeding tube doesn't have to look any different than living without. If anything it makes me the ultimate multi-tasker! When was the last time you ate while paddling a kayak in Alaska? I've been rock climbing, biking, hiking, running, horseback riding, etc. all while running my feeds (plus swimming but can't run my feeds while in the water =P). I've gone on a cruise to Alaska and spent a week at Disney. I've flown to California, Texas, Washington, and Florida while bringing all my tube feeding supplies along for the trip. I've continued working toward my degree, volunteered at church, and helped my mom present at business conferences. And I wasn't able to do all this in spite of having a feeding tube, but because of Herman (and now Sherman, too). My tubes have allowed me to get the nutrition I need to be able to get out and LIVE even when my body won't allow me to eat normally.

One of the oddest comments I've gotten since having Herman placed 2 years ago is that I look too healthy to need a feeding tube. (What made the comment even odder was that it was made by a dietitian...) I would hope I do...that's kinda the point! Take away Herman and Sherman and I'm left with no way to get any nutrition when my mast cells decide all food (and sometimes even liquids) are dangerous allergens. Before my feeding tubes I was barely able to maintain my weight that was already too low. One day of throwing up and I could drop 5 lbs and STRUGGLE to regain even just a single pound. Even with my feeding tubes, I still go through seasons where I will lose weight rapidly with no apparent reason. Maybe I look too healthy to have a feeding tube, but it's because of my tubes that I can look this way.

It seems fitting that I'm starting off Feeding Tube Awareness Week with a nutrition consult, although I'm not sure if this will end up like the 6 previous dietitians I've seen who either can't offer any help or make comments like I wrote above. Receiving the appointment confirmation that said to bring a 3 day food diary and list of favorite/frequent meals isn't giving me a lot of confidence, but I'm doing my best to keep an open mind...

In addition to this being Feeding Tube Awareness Week, February is also about rare disease awareness leading up to Rare Disease Day on the last day of the month. This year, the theme for Rare Disease Day is RESEARCH, which we so desperately need in the mast cell community. Please, take a moment and share this post! I don't blog just so people will read about what's going on in my life but to share my story of living with mast cell disease. Research can't happen without funding, funding doesn't come without awareness, and awareness comes from those of us living with these rare diseases speaking up and sharing our stories. I might not have thousands of dollars to contribute toward research, but I do have a voice and a story. Please help me share that story so that one day, maybe I can celebrate Feeding Tube Awareness as someone who USED TO need a feeding tube!